Beating the Odds-- So Far

Not mine, but illustrative

I don't believe in food-as-medicine.

Yes, I believe in getting one's nutrition as much as possible from healthy, wholesome, locally-grown food eaten in reasonable amounts and proportions.  But when it comes to the esoterica of when and how and how much and in what combinations, my response is "Non credo."

You've seen them.  Articles from nutrition pundits who tell you to eat a cup of fresh blueberries three times a day every day for the rest of your life.  I like blueberries, but not that much!  Or blog posts insisting that all grains are inherently bad for people and one should never eat them.  Or the book that tells me I should never eat red meat after three in the afternoon, and then only if I've done four impossible yoga poses before sunrise.  And don't forget the earnest folks who tell you you can't possibly be healthy unless you consume some exotic fruit or herb found only on some South Pacific island the Polynesians have never heard of.  No.  Can't swallow that.

But there's a way lately that I have been taking a more therapeutic attitute towards food, and to some extent it's paying off.

A couple of things dovetailed this spring, and a very portly dove it was, too.  The first is that the low blood sugar I've put up with since my college years at least seemed to be getting worse.  I found myself getting lightheaded more frequently, and even feeling I was going to faint a time or two.  Yeah, some people would say I should run off to the doctor and get tested for diabetes.  That's not me.  If I can deal with it myself, I will.

The second thing is that I noticed that I'd gained a lot of weight since my last post-chemo weigh-in in late February.  Above the waist, where I generally don't put it on.  Rolls of flab on my back.  No more definition in my upper arms.  The pot around my belly button greatly increased.  I hadn't changed my eating or activity habits at all, but here it was getting difficult if not impossible to fit into my clothes.  What's this all about?

So towards the end of May I decided to tackle both these problems at once.  I'd change my eating habits.  I wasn't going on a diet, oh, no.  Nor would I renounce any particular food.  I've been at this weight loss game long enough to know that that's the recipe for desperation and disaster.  No.  Instead, I began to stretch out my meals.  Instead of eating three largish meals a day four to six hours apart, I'd spread them out.  Have the protein at one little meal, then two to three hours later have the starch I would have had with the protein.  Be conservative about portion sizes, and learn to enjoy, say, new potatoes boiled with just salt, pepper, and parsley, no butter or gravy.  Of course I had to go back to enforcing my no-eating-after-9:00-PM rule.  By all this I hoped to keep my blood sugar even and kickstart my metabolism so maybe I could lose a little weight.

I'm still at it.  It's been interesting the past month.  My birthday is in mid-June, and customarily I share the celebration with my friend Frieda*, who was born in late May.  We celebrated this year on the 2nd, and I made our favorite sour cream chocolate layer cake.  Sent a good two-fifths home with her and shared a couple more pieces with a small neighbor boy who has no compunction about opening my fridge and begging for whatever treats he sees inside.  This left me about half the cake.  You know it took me three and a half weeks to finish it?  I could say I'm "restricting" myself to one dessert "meal" a day, but the fact is, I don't feel like having more than that.  The cake was a little dry by the time I ate the last piece the other day, but it was still good.

Sometimes stretching meals out can backfire.  Couple weeks ago I ate something that was evidently past its use date.  Evidently, judging by all the painful pot-sitting I had to put in that morning and afternoon.  Banana bread.  Spoiled banana bread.  Ordinarily, I would have finished that ages before, but not this time.  I've learned to put things in the freezer if I'm not going to eat them in a reasonable time.

Happily, this regimen seems to be working to even out my blood sugar.  I might still feel a little lightheaded when I finish one of my snacky-meals; normally, that would justify my eating more right then.  But with a shallow nod to the food-as-medicine advocates, I tell myself, "No, let the food work.  You wouldn't take another dose of aspirin if your headache wasn't gone the moment you swallowed the first two tablets, would you?  All right then."  And most of the time, the airheadedness soon goes away.

However, it didn't seem that I was losing any weight.  I have two body scales in the house, neither of them accurate, but their inaccuracy was not encouraging.  I was still being squeezed by those fat rolls above my waistband, and the post-hysterectomy pot below my waist was as protruding and obtrusive as ever.  What was wrong?  I can swear I'm eating only two-thirds to a half of what I was before, so why aren't I dropping the pounds?  It's not like me to get cancer head before my post-chemo checkups, but I found myself wondering if something was Wrong.  Especially since my digestion isn't totally back to normal after that bout of food poisoning.  Oh, lord, what if the cancer had come back and got into my intestines?

It didn't bear thinking of.

So I didn't.  Instead, I went online and looked up "menopot," a cute name for the very uncute bulge we women often develop in our midsections post-menopause.  None of the articles I read was specific about the precise location of the bulge, above or below the waist, but all agreed that it was endemic, annoying, and about impossible to get rid of.  I gathered also that I shouldn't gripe that I'm fighting it now, after my cancer surgery.  The remarkable thing, apparently, is that it didn't set in seven years ago when I hit natural memopause.

So my triannual post-chemo checkup was this morning.  And withal I braced myself for possible bad news.  But all my test reports came in normal, all my numbers are good.  So with my former ovarian cancer, I am continuing to beat the odds, so far.  And as to my weight on the doctor's official scale . . . ?  Down.  Five pounds from my February weight.  Being weighed in jeans.  Which may mean I've lost six or seven pounds since the end of May, since I know I gained some since the February weigh-in.

And I have to admit that those jeans are size 8 slims, and it's easier to zip them.  And my tape measure says I've lost a half inch off my waist in the past month.  So enough with the pessimism!  When it comes to post-menopausal weight gain, it looks like I'm beating the odds there as well.

So far.

The Gifts of God Alone Remain

I say it to my shame:  I still have no medical insurance. Thus I had to reapply recently for financial assistance from the hospital system that did my cancer surgery and chemotherapy.  Today I received a letter from their financial assistance department.  The second paragraph read:

This letter is to inform you that your recent request for financial assistance has been approved for a 100% discount.  This approval applies to your accounts with outstanding balances before 06/02/2011.  The total amount adjusted is $x,xxx.xx.  Please note that this financial assistance approval applies to all N--- Hospitals, N--- Cancer Centers, and/or N--- Physician Services for services which qualify under our policy guidelines.

I read this and I was deeply humbled.  I nearly cried.  100% of my outstanding balances forgiven?  Oh, what a difference that will make, especially with the school year ending and my teaching income coming to an end for three months or more!  It was almost too good to be believed.

Well, maybe it was too good to be believed.  I know good and well my total outstanding balance is more than the amount given.  I went upstairs to my computer and checked for sure.  Yep.  The amount I'm still making payments on is actually 40% higher than the amount given.  Oh.

The last character I want to emulate is the welfare queen who thinks she's entitled to other people's money.  So if there was some reason why "100% of the outstanding balances before 06/02/2011" doesn't mean "100% of the outstanding balances before 06/02/2011," I wanted to know how that would affect any payments I still needed to make.

So I called the "any questions" number.  I was transferred to a nameless someone in the Financial Assistance Department and asked my question, reading out the relevant paragraph in the letter.

At first she said the letter had given only a partial amount "because the rest of it hasn't been billed yet."  But I told her out that pretty much all my outstanding balance is from the surgeries and hospitalizations I'd had in March and April of 2010 (my chemo, barring last week's followup, is paid up and current), so it certainly has all been billed.  She insisted, however, that my balances on "those two accounts" is 0.  Funny, I have three accounts with balances yet to pay  . . .

Nevertheless, I said how grateful I was, considering my circumstances, and what should I do with the statements I've already received for payments on account to be made in June?  I wasn't about to be presumptuous and say, "Oh, good, I guess that means I don't have to make any more payments, right?"  There was still that discrepancy between my figures and theirs.

It was about now that she said, "I need to check something."  I visualized her digging around in some pile of papers, but of course it wouldn't be that, it'd be on her computer.  She gets back to me and says, "I think there's been some confusion.  You already had a 80% discount on the bills you incurred last year.  We can't give you any more discount on that.  This $x,xxx.xx applies only to services since January of 2011."

Oh.  But wait a minute, ma'am.  I've had nowhere near $x,xxx.xx of services since the beginning of the year, and most of that is already paid for.   (Not to mention that my previous 80% discount had extended to mid-March).  But she went on about the forgiveness applying solely to my "Physician Services" bill, including, she said, to an amount "in May" that could only be my last week's post-chemo check up.  That's what was being taken care of.  Yes, nice, but that's not Physician Services, that's Oncology-Hematology.  She wouldn't or couldn't clarify, so I, taking to heart the maxim about not checking the gift horse's mouth, didn't press the matter.  True, I felt rather as if I'd been promised a fine Morgan plow horse and ended up instead with a miniature Shetland pony.  But it's not like I had earned either, right?

So, as I summed up to her, I'll go ahead and pay the statements I have in hand as arranged, and wait for the July bills to see if or where any adjustments have been made.  It really was too good to be true, so it's not like I'm suffering from any big letdown . . . though I have to wonder what the point of the letter was . . . it really looks like I'm in exactly the same situation I was in before . . . and what's going to happen with my future chemo followup bills, which will certainly be incurred after last Thursday?

Guess I'll have to wait and see in the weeks to come.  What's apparent now is what I implied in the title to this post-- Gifts given by man fade, wear out, are consumed, or even are taken away.  Only the eternal gifts of God in Jesus Christ remain.

Getting Lit Up

Today I embark on the next stage of my cancer cure journey.

Though maybe I don't want to use the words "next stage" in regard to cancer, since it implies things getting worse, not better.  Which, God willing, is not the case.

I'm presently sitting in the waiting room of the radiation oncology department of my local hospital, slurping iodine water to light me up for my baseline CT scan. 

Now that my chemotherapy's over, I get the exquisite pleasure (!) of going in for a CT scan every three months for two years to make sure the cancer zombies aren't coming back.  Then once every six months for three years after that.  The baseline scan today should-- no, blast it, will establish that I'm free of all abdominal and pelvic masses, tumors, lumps, bumps, and other execrences that could even vaguely be construed as cancer.

Coincidentally, yesterday my friend Ruth* (also a cancer survivor) sent me a link to an NPR feature about an oncologist who has just published a book called The Emperor of All Maladies: A Biography of Cancer.   In it he writes about the manifestations of cancer throughout human history, coupled with his own experience treating patients suffering from it today.  The excerpt seemed well-written and compelling.  I may read the book when the subject becomes less . . . personal.

But at the bottom of the book article were links to other NPR items, including a rather alarming one about increased risk of secondary cancers from both diagnostic and follow-up CT scans and other radiology techniques.  There is a particular danger, it said, for women in my age group who undergo repeated scans.  The author says that the amount of radiation varies from hospital to hospital, machine to machine, but in some the dosage is as high as what the survivors at Hiroshima and Nagasaki suffered . . . and we know what happened to them later in life.

Oh, joy.  Isn't this just designed to inspire confidence!  But as I understand it, I have to have these tests, because if despite everything the ovarian cancer manages to come back, it has to be found as soon as possible.  So a few minutes ago, when the nurse brought out the iodine water and the clipboard with the form to fill out, I mentioned the radiation risk.  And happily, she agreed that in my case, with the repeated scans scheduled, they should assuredly put me in the low-dose machine.  And happily again, that turns out to be the one they used on me last March.

So here we go.  God grant that I will now and hereafter be dancing with NED (No Evidence of Disease) and all this will be strictly routine.

Well, All Right

A friend who follows this blog mentioned on Facebook this evening that I'd been leaving all three of you dangling for several weeks.

All right, let's do a highlight reel.

1) Not sure what was wrong with the car, but it hasn't done it since.  The garage thinks maybe a piece of dirt stopped the fan and that's why it overheated.  They didn't charge me for checking it, which was nice.

2)  On the 19th of July I attended one of the American Cancer Society's "Look Good, Feel Better" makeup sessions.  It wasn't exactly what I expected.  I thought it'd deal specifically with how to mask the visible effects of chemotherapy, but it was more like basic this-is-how-you-put-on-makeup.  Good grief, I've known that since high school.  Well, I came home with some products I could use, so that's something.

3)  Twice now I've had to postpone my chemo treatment a week because my blood counts were too low.  I don't have much leeway to begin with, so it's not surprising that my white counts, especially, have taken a hit.  Thank God, they've come back up in time for me to get my infusions at a four week interval, with no supplementary blood-boosting drugs.  But the delays mean I won't  be finished until the 11th of October-- if I'm lucky.  It could stretch out to nearly Halloween.

4)  As far as effects go, tiredness is the main one.  It's hard to tell if I'm being lazy or if it's just chemo effect.  I know I don't get as much work done as I'd like to.  The hair, even after four treatments, isn't 100% gone, though alas, the eyebrows are flaking out a bit.  I admit I look in the mirror and see my little-old-man pate and think, "This is stupid!  I could have gone the rest of my life without this!"  But there it is.  And fortunately, I do okay with the wigs when I go out.  Otherwise, I let my head hang out around the house. And sometimes in the yard.  And the neighbors' yards.  Unless it's too hot or too chilly, that is. 

Everyone tells me how healthy I look.  This is good, I know, but sometimes I crave a little sympathy.

Or maybe I don't.  I don't like it when people patronize me over the chemo.


5)  I've been getting a shot at four different interim pastor positions the past three or four weeks.  "Three" I should say now, since one of the churches phoned me today and said they'd decided to hire someone else.  And that's the church that's given me the only real interview so far; the rest of them have been informal look-sees when I've come to supply preach.  I spent a week obsessing about that interview and getting really depressed about my prospects-- how to cover what happened in the past without making me or my former church or my presbytery look lame--, but I felt it went well on the day.  Not well enough, obviously.  But maybe it wasn't the right position for me anyway.  That church is in the middle of a worship war, with "contemporary" currently in the ascendency, and if there's anything I find to be a non-edifying, crashing bore, it's so-called contemporary worship.  I would not have been neutral, no matter how hard I tried!

I hope and pray something comes of one of these churches, since I can't support myself on substitute teaching.  (School year started here this past Tuesday, but I haven't been called in yet.)

That's good enough.  I'll try to be more diligent about posting in the future.  Besides, when you're in my position and you go silent, people might begin to worry.  I know I do.

Round Two, Week One

Received my second chemotherapy infusion yesterday.  Nurse Nell* was willing to forego trying to put the cannula into the back of my left hand this time, but the first wrist vein we tried eluded the needle when she put it in.  So it was back to the tried and true sites on the inside of my wrist.

No flashbacks to the keg parties at the college dorm from the Benadryl this time.  When I told Nurse Nell it hadn't made me feel sleepy, just drunkish, she gave it to me more slowly.  And as the afternoon wore on, I was certainly tempted to catch some ZZZZs!

I exercised some discipline and used the first hours mending two more sweaters.  I will not have the schoolchildren next fall laughing at the holes under the arms of my cardies!  That wasn't a penance, despite the heat outdoors.  They do an excellent job at the Cancer Center keeping the interior climate controlled, not too chilly and not too warm.  Haven't needed to use the quilt I brought yet.

This time, though, I didn't get as much Western Civ literature read.  Brought my laptop and wasted a lot of time trying to get online via the fragile guest wireless signal they provide.  Managed to make a couple of Facebook status reports, but otherwise I was refreshing and refreshing and trying, trying, trying to reconnect more than I was working or surfing.

My pod mates were all older gentlemen.  One being treated for abdominal cancer (Eh.  That's the metastasis from my ovarian cancer I'm trying to avoid), one getting chemo for colon cancer, and the other one, I didn't ask.  The colon cancer guy was on infusion eight in a course of twelve.  Wow.  He told me that people "sail through the first one or two treatments, but it gets rougher after that."  Uh, yes, I've heard that can happen . . . meaning that every good day or week I have is to be received with conscious gratitude.

(I'm on to preach at least three times this summer.  Wonder if I should write those sermons now, while I'm still feeling half-decent?)

They must all have been getting different medications than I, because none of them were sporting chrome domes.  Me, I'm thinning out more every day.  (More on that below.)

It was interesting, too, that I was the first one in the pod and the last one out.  I started my pre-meds a little after 11:00 AM and finished up my chemo at 4:30.  Only one other woman was there getting chemo after me. 

My report time was actually 9:45, but I saw the doctor and had my bloodwork done first.  Found out from him that yes, I may take my beta-blocker pill if I need it; yes, I can have a glass of wine or a beer if I want it; and the reason I've had the munchies the past week and a half is because that's what Decadron, the steroid they give me pre-chemo, works.  It has been weird:  First ten days post-chemo, I've craved small meals of very healthy food.  Then bang! my blood sugar was crashing at the most unexpected times and I wanted chips!  donuts!  cornbread!  hot dogs!  at all hours.  And don't show me a piece of lettuce, though every lettuce plant in my garden should bolt from neglect!  I gained nearly a pound and a half since the 21st.

Today I'm back to the healthy eating phase.  At the moment I'm consuming a nice salad of lettuce, shelled snow peas, purple sweet peppers, mushrooms, and shredded cheese, the first three ingredients all from my garden.

Last night, I ground up some more leaves and mulched more of the vegetable garden.  I'm feeling quite normal today, too, maybe because I'm heeding the instructions and taking my anti-nausea pills even when I feel just slightly queasy.

My American Cancer Society wigs have come in and the best of them is the "halo" (tonsure!) you have to wear under a hat or scarf because it has no pate to it.  All of them need the bangs feathered out and thinned down, and I'm wondering if I've been a little too daring in ordering the Sabrina model in the golden blonde.  Though I've historically been on the blonde side, the dark brown of the Caitlin looks more "me," somehow.  And whichever one we're talking about, I think I have to get used to more bulk at the top.  Must be the Current Style.  But these aren't so bulky and wiggy as my "official" cancer wig is.  It still looks awful.  I tried it on for Frieda* when she came to pick me up yesterday morning and she thinks it definitely needs major pruning.

Oh, well.  I'm thinking of taking my whole wig wardrobe over next door the next time everybody gathers on the neighbors' porch and letting them say what they think.  If the golden blonde is agreed to be Too Much, I can always try again in my usual dark brownish (aka "dirty") blonde.

Once I'm satisfied I have at least one whole wig I won't be embarrassed to be seen walking about wearing in public, I'm going to drape a towel around my shoulders, take my hog-bristle hairbrush, and brush, brush, brush my hair right outta my head.

Shedding

Oh, if I ever lose my hair,
If my pate goes bald and bare,
Oh if I ever lose my hair,
Oh, if,
Oh, if,
I won't have to  brush!

I've been getting preliminary scalp twinges the past couple weeks, and the stray hair began floating out now and again for a few days now.  But this past Sunday evening, the shedding began in earnest.

I drove to evening service with the window rolled down, enjoying the wind in my hair (since I soon won't have that for awhile!). In the church parking lot, I ran a brush through my locks to put them back in order, hit a tangle, and a whole bunch of strands came out with it.  Yep, two weeks since the treatment, right on schedule!

Monday morning in the shower, a lot more emerged on my fingers after the conditioner.  I read online a month or so ago about a woman who, when her chemotherapy made her hair come out in the shower, collapsed on the shower floor and cried "for hours" until her husband came and rescued her.  Me, I don't have a husband (unfortunately) and none of my animals, brilliant as they are, have figured out how to work the doorknob.  So I was forced to be philosophical about the phenomenon and just towel-dry my hair as gently as possible and make sure the sheddings didn't clog the drain.

Actually, if I'm going to get horribly upset about all this, it'd be from reflecting on the fact that I've never had the privilege of identifying myself with my looks.  But that'd be a different post.

Upstairs, more strands in the hairbrush, more big wads for the wastebin.  I've also read of women who say their hair came out "in clumps."  Either they don't define clumps the way I do, or my hair's just thinning out hair after hair after hair, all over.  I was expecting to see big patches of scalp right away.  Nope, and thank God for that.  That would be disconcerting.

Until last night I kept my hair bound up in a highly-unfashionable but effective scrunchie.  Last night, I went to SuperCuts and got myself a short pixie cut, as documented by my friend Frieda.*  Transitional stage, as my long hair was starting to feel like an alien creature camped out on my head, but I just can't see myself doing the razor thing.  It reminds me too much of concentration camp prisoners and early church era shorn prostitutes and other shudder-worthy associations.  The new cut looks pretty good and it's too bad I won't get to keep for more than a week or two. 

Tomorrow I go pick up the new wig.  I had more trenchant and funny things to say on this subject, but I spent the whole day hauling river rock out of my west border and turning the compost pile, and I am exhausted.

Miss Tiggy-Wig

For something that isn't costing me anything, I sure am putting a lot of time and worry into this wig thing.

It's a very nice deal, really.  A civic women's group here in the county has a fund to provide up to $200 for chemo patients to purchase wigs to cover their hair loss, and somehow it works out that even if the wig you choose costs more than $200, you still get it gratis.

I figure that with one shot at my freebie, I want it to be right.

So.  The civic group has two and only two wig shops here in the county where the certificate can be redeemed.  In May, when I was still not allowed to drive, I rang and opened diplomatic relations with one of these ladies.  But before I could go see her, I talked to my friend Frieda*.  Frieda had gotten her own cancer wig from that shop, and hadn't been satisfied.  "She was really nice," she reported, "and she had a good selection to look at, but when she styled my wig she did a really horrible job!"

Oh.  Don't want that.  So a week ago yesterday I went to the other hair stylist/wigmonger on the list.  I'll call her "Dorothy*."

Oh, dear.  Dorothy was also very nice, but did not have a good selection at all.  I think there were three wigs in the entire shop.  And judging by what she said when she tried one of them on me, I'm afraid her styling abilities may have nothing over her competitor's.  But with me not being the one paying for this, I couldn't very well go away and try the other shop, could I?

But oh! she tried this one wig on me and said, "That looks really cute on you!"  Yeah, if by "cute" you mean the skanky teased-up style from the 1960s.  All I would have needed is a black headband, white lipstick, and some menthol cigarettes to complete the look.  Uh, no thank you!

Next one available was in a short, tightly-curled, I-get-my-hair-done-like-a-steel-helmet-every-Thursday-rain-or-shine old lady do.  I vetoed that before it got anywhere near my head.

The third one was equally impossible, so we turned to the catalogs.  I can't explain it, but most of the available styles seemed right out of the 1980s.  Think Big Hair.  Think poof and voooooolllllluuuuuummmme!  Good grief, are these really the latest models, or have these catalogs been sitting around here since the Reagan administration?

Finally, I picked two for Dorothy to order in on spec.  One longer and one chin-length, both with some easy curl to them. My own hair has a natural wave in it, so why not take advantage of the situation and get a wig that looks like what I wish my own mop would do on a good hair day?  I arranged to try them in two different colors, both pretty close to my own shade, but maybe a little brighter.  They advise that for chemo patients.

Two days ago, then, Dorothy left me a message saying my wig(s) were in.  And today, by appointment, I drove over to see which I should choose.  I was looking forward to trying them on, especially the shorter one.

But what's this?  When I arrived, Dorothy handed me three boxes, and none of them held the right models!

"Oh, no!" she apologized.  "Those must be for somebody else!  Your wigs aren't in yet!  Remind me which ones they were."

Through the superannuated catalogs again to find the ones I'd chosen.  And here were more catalogs for me to look at, while she took care of a customer.  I found a really cute wig in one of those and was wanting her to order that for me to look at, until she pointed out that it was what's known in the trade as an augmentation.  Just a hairpiece, in other words.

Oh.  Too bad.

Eventually, Dorothy admitted that she had ordered the three wrong wigs for me.  "So much has been going on in my life, I'm just that confused, you can't imagine!"  I went ahead and let her try them on me.  "Oh, that looks really good on you!"  No, sorry, it does not.  None of them.  Though it did help me decide which of the prospective colors was better.

I decided there was no point in me looking at a long wig.  In the summer I pretty much always wear my hair up, and what's the point of going for a long wig if I'm just going to make my head hotter by doing that?  So let's just reorder the chin-length one by Alan Eaton, okay?

But she couldn't find the fake-hair color sample ring for it.  And when she called her supplier to see about matching my hair for it, she was told her usual rep isn't handling that manufacturer any more.  She felt she probably could still get it, but I'd better keep looking.

Another customer came in.  I was showered with more catalogs, three of them from the same supplier, Gemtress.  Does she never clean these out?  Sat there looking at them with her ginger cat sprawled in my lap.  Same wig kept catching my eye, in all three catalogs.  Medium-short, softly curly, but shown styled in different ways.  A possibility, yes.

What color, though?  Wig hair color numbers seem to be somewhat consistent across manufacturers, but there's nothing about the assigned digits that tells you anything at all about the shade or hue of the color.  I simply had to go though the samples, detach the likely ones from the ring, and check the chart to see if that wig came in that color.

Wasn't much of a choice, if I intended to go with a color more or less like mine.  Soon as Dorothy was free, she came and held the possibilities up against my own hair, so I could check them in her singularly ill-lighted mirror.  Funny I'd do what I did, letting her talk me into a tri-color light-brown to medium-blonde shade, considering what I've learned about her aesthetic judgment.  But it was either that or settle for a very drab, dark, solid shade.  So I'll risk it.

And it will be a risk, because the wig I decided on is-- unlike the ones she mistakenly got in for me to look at-- not returnable.  Whatever color I chose today, that's what I'll be stuck with.  Dorothy was willing to try to order the Alan Eaton wig I'd originally wanted, too, but what would be the point?  I liked it, but good grief, this catalog dates back to 2006.  Very possibly it's no longer available.  And seeing she told me the Gemtress model was better made, and seeing that it apparently can be dressed up or toned down, let's cut the fooling about and just order the one.

And please, Jesus, let it be good!  I've been taking this hair loss thing a lot more in stride than some women do, but I think I'm hanging a lot on having my official wig make me feel good and look presentable.

Dorothy had me write down the manufacturer, model, and color of my choice on a 3x5 card.  Lord willing she doesn't lose it, or misread it, or misconstrue it.  I've already wigged out over this enough as it is.

Some Observations

I'm thinking it might be useful for me to say a few things about my first chemo session this past Monday.

(Note photo of me in back yard afterwards, with bandaged wrist. And with hair, still. Very messy hair, since the photographer had to leave and didn't have time for me to find my brush.)

• In the first place, getting chemo was a full day's work! From the time I arrived in the waiting room to the time my friend Frieda* came to pick me up, it was eight hours or more.
  
• The treatment pods have four recliners in them with four IV stands and two TVs. I was the second patient in mine Monday morning. The lady who was in before me was on her final round for colon cancer.
  
• The nurse who took care of me-- I'll call her Nell*-- was really patient and thorough in telling me exactly what was going to go on in my chemo and what side effects I could expect over the course of it. She answered questions as long as I had them. What I don't get is, why, considering that I heard all that before the drugs began to flow, I seem to have retained so little of it!? I'll be glad for Frieda's notes, when I get them.
  
• On the other hand, Nurse Nell wasn't so proficient at getting the IV started in the back of my hand. Blew up the vein-- ow! and had to go for the wrist. It doesn't look so bad today, and I wonder if they'll be able to try again there the next time.
  
• I was not at all thrilled to learn that my pre-chemo blood counts fall around the 33 percentile of what's considered adequate and healthy. I kept asking her if I could improve that by eating better. No, she kept insisting, my baseline is perfectly healthy and normal for me. It is what it is. Yeah, maybe, but I dislike having so little leeway. They have drugs they can give you to get your counts up so you can go on with treatment, but still. (I've been eating iron-rich food since Monday, anyway. Makes me feel I'm doing something for the cause.)
  
• I got four anti-side effect drugs, fifteen minutes per bag, before the cancer-killing drugs proper begin. I can't quite remember what each of them does, but the most impressive one was the liquid Benadryl. Yikes! They say it puts you to sleep; it made me feel like I'd just come from a residence hall kegger! I brought in a sweater to mend, and was taking the last few stitches when the deck, so to speak, began to roll. "Shall I give into it?" I asked myself. Decided not. So I kept my eyes open and my posture semi-upright and went on to read Sophocles' Oedipus at Colonus, even if I had to use the bookmark under the lines to keep from reading the same sentences over and over!
  
• The chemo drugs took longer Monday than they will at subsequent treatments, because Nurse Nell started them slowly to make sure I wouldn't have a bad reaction. Not sure what that would have been. Swelling up? Turning purple? Suddenly sprouting legs on top and walking on my head? Whatever it was, it didn't happen, and things proceeded according to plan.
  
• Three hours and ten minutes of the Taxol gave way to about an hour and fifteen minutes of the Carboplatin. Kept reading Sophocles through it (finished Oedipus at Colonus and went on to Antigone), even though the TV had been turned on long since by a lady who was in with her husband. Medical shows and Dr. Phil most of the day. Did you know they have an operation where they can remove half a person's brain and leave them with fairly normal function? Didn't catch what this is supposed to cure, but it's fascinating what you learn.
  
• I learned also that with all the liquid being pumped into you, if you feel like you gotta go, you gotta go. With the drug-induced unsteadiness and the shopping-cart perversity of the IV stand wheels, I couldn't help but feel I was about to be pulled over and busted for DUI on the way to the unisex can. But it was nice how nurses and other patients' caregivers would step back and let me use the bathroom ahead of them, even if they were there first.
  
• Plowed through my patient's binder, as much as I could. Every damn last possible side effect is in there, it seems, and what to do about them seemed confusing and contradictory. Emphasis on seemed. Clearly (as clear as anything was the other day!) there was no point in memorizing it all. Wait and see what happens, and go from there.
  
• Frieda and I prayed in the car before going in; my request was that God would somehow use me in this to minister to other people at the Cancer Center. Didn't think I had, really, but as I was waiting for Frieda to pick me up I got to talking to the lady there with her lung-cancer-fighting husband. Me, I thought I was just passing time and maybe being a little nosy. But when I was bidding her goodbye, she told me what a great comfort and help my words had been to her, and how much better she felt having talked with me. I suppose I shouldn't be surprised at what God can do, but I never cease to be amazed when He does it through me.
  

I've been doing pretty well since Monday. A little queasiness now and again but nothing alarming or eruptive. Some suppression of my sense of taste and appetite, but nothing that keeps me from eating anything sufficiently savory. I've gone to a continuing education session at the Presbytery office and done a decent amount of gardening; I get tired maybe before I would ordinarily, and have to remind myself that this isn't "ordinarily" and stop and do something sedentary.

I know it'll get more challenging as it goes along, but I'll jump off that bridge when I get to it.

Zombie Wars

I've often wondered why people have such an instinctual dread of cancer. It can't be simply because up till recent times it was pretty much always fatal. Tuberculosis, for instance, was just as much a death sentence and people didn't go around talking about it in whispers. My grandfather's first wife died in her 20s of consumption and from their letters I know they both knew she was doomed even before they got engaged. Everyone around her knew she had TB. Everyone was open about it; it was a fact of her life until she had no life left.

And I don't think cancer's basic horror is that it involves your own body turning traitor on you. Auto-immune diseases do that, too. So do infections. I remember a line from a Bill Cosby routine where he's recreating the scene when his mother took him to the doctor to see about getting his tonsils taken out. Doc says something like, "Kid, your tonsils are like sentries that're supposed to keep the bad stuff out. But in your case, they're fighting for the other side."

True, there is a mystery to cancer in that its cause is often so hard to trace. Otherwise perfectly healthy people (like me!) can pop up with it. It's not like you catch it from Aunt Martha at the family reunion-- in all due respect to an old lady I heard of, who kept the photo of a family member who'd died of melanoma securely wrapped in plastic, "Because it might be contagious."

But still, I don't think that's the font of the primal fear of cancer. I think it has to do with our dread and loathing of zombies.

Yes, zombies. Ever notice how our society's sick fascination with those monsters has grown along with our rising cancer statistics?

Anyway, I'm no expert on the Undead, but cancer cells and zombies have a lot in common. Both are mindless. Both have no "purpose" but to devour and assimilate the living. Both replicate themselves in fast and horrendous ways. Neither contribute to the good of the body (politic), but rather, feed on it and destroy it. And worst of all, both zombies and cancer cells are frighteningly difficult to kill.

Speaking seriously on cancer, I read someplace recently that that's what makes cancer, cancer. Ordinary helpful healthy body cells do their jobs then die off and are replaced. Cancer cells have mutated so they don't know it's time for them to die. They're so biologically brain dead, they don't even know they're damaging the body they infest from the word Go.

The idea of something mindless and destructive and horrendously hard to kill growing in you and taking over your system is inherently creepy. No wonder people have traditionally feared cancer and not wanted to mention its name. You don't want it to be true, and at the same time, you don't dare ignore it, unless you want your innards to be the physiological equivalent of those popular zombie-apocalypse films.

We are told on Very Good Authority (Wikipedia, right?) that the only way to destroy a zombie is by going after its brains before it goes after yours. Fighting cancer, we have a few more weapons, which is good, because this battle is real.

And I, tomorrow I'm engaging in front number two in my own zombie wars. We had the cutting-out campaign in late April; in the morning we begin the chemical warfare. I expect to be a bit battered before it's over this September: you have to expect to take a few hits when you're combatting the Undead. But fight I shall, and by God and St. George*, I expect to win.
________________________
*You'd think I'd invoke St. David, wouldn't you, if I'm going to invoke a saint at all. But St. David isn't known for his military prowess, and St. George is. Besides (should my fellow-Reformed object), I'm being more literary than religious. 'k?

Too Much Drama

A rant, with a moral in the tail:

Got a call early this afternoon from the mechanic's, saying my car was done and I could come get it.

I've known since late Saturday afternoon that my neighbor was right, the front brake rotors needed replaced. And since I pulled the codes off the car myself on Thursday, I knew that the check engine light was on because of something wrong with the knock sensor and because the car was misfiring on all cylinders. Yesterday, the mechanic called and said he'd located a Technical Service Bulletin from Chrysler describing this problem and recommending tackling it by replacing the sparkplugs and wires and installing (reflashing) an update onto the engine computer. This turned out to work, and now the car was fixed.

I'd picked this local garage-- I'll call them O'Brien's*-- over the dealership because the latter is several miles up the Interstate and I was nervous about driving the Little Red Dragon far and fast with an undetermined misfiring problem. True, last time I dealt with this mechanic, he'd expressed some odd and alarming opinions on the moral wrongness of customers bringing in parts for him to install, on the principle that to deprive an auto serviceman of the markup was to take food out of his children's mouths. He thought the same about shade tree mechanics who fix friends' cars very cheaply or for free: not that it might not be wise in terms of getting a good repair, but that it was actual theft from the professionals. But this time there was no question of bringing in pre-purchased parts or letting an amateur have a go at it; I needed a shop that had Chrysler diagnostic equipment and didn't require too much driving to get to, and O'Brien's fit the bill.

So I walked over to pick up my car. As I wrote out the check to pay the bill, I asked Mr. O'Brien some questions about what had been done so I understood it. Everything seemed to be amicable and informative. One thing I inquired about just before I went was, should I expect anything different about the way my PT drove at first, since I'd read that a computer reflash could necessitate its needing to "relearn" some things about how you drive and all. He told me it might be a little rough on idle for a bit, or maybe stall out when I stopped at intersections. But it'd get over that soon.

Good, that's the kind of information I needed. I took my keys and my paperwork and went out and got into my little red car. No check engine light on, great! but it was making a high-pitched jingling sort of noise!

What is this? I know it wasn't doing it when I brought it in. Was this part of the computer's relearning things? I nearly reparked it and went back into the shop to ask, but thought well, maybe it was.

I had to go by the Post Office to get stamps, and by the time I got over there I decided I had to find out. The noise could be heard on idle or while driving, and it wasn't going away. I got out my cell phone and called.

Mr. O'Brien was put on, and when I comfirmed that yes, it sounded like crickets, he said, "That's probably a belt."

"Is that part of the computer relearning things? It wasn't doing it before."

No, he said, it wouldn't have anything to do with reprogramming the computer, and I should bring it back and he could take a look at it.

So I did. By the time I got there, it wasn't jingling at idle anymore (maybe because there had been slightly-rough idle, which now had settled out), but when I revved the engine, there it was. He located the problem belt for me (found out a little later it's the one for the alternator), and that's when things got very bizarre.

I can't guarantee the chronology of the conversation, and maybe it doesn't matter. But Mr. O'Brien proceeded to inform me that he'd been very offended when I'd told him that "It wasn't doing it before," because that was as much as to accuse him of having caused the belt noise himself. That it probably was doing it before, I just hadn't noticed, and now I was noticing only because he'd worked on it. That when he used to work for a dealership, customers would bring cars back with issues like this and they'd put a new belt in for free, but he couldn't afford to lose that kind of money on things that most likely had been going on before anyway; indeed, he said, he'd noticed the noise but I hadn't mentioned it for repair, so far be it from him to run up my bill by being like the dealerships and suggesting it be replaced! And, he said, he has Asperger's Syndrome so he's very precise and does everything in a very set, determined way and now I was bringing my car back and implying that he'd done something wrong by-- by what, I'm not quite sure. Close as I could tell, he thought I was accusing him of some incompetence that made the belt suddenly start to jingle and chirp.

All through this, I'm in conciliation mode, telling him no, not at all, it's just that it was new to me and that I wanted to make sure all was well with my car before I got it too far away. I tried to adduce an example of a time when something unrelated did go wrong with a car just after I'd picked it up from the repair shop, thinking to say, "Hey, it happens, that time I was glad I brought the car back, I learned from that experience, so now I'm doing the same."

He wouldn't hear it. "That makes as much sense," Mr. O'Brien said, "as me saying I had a bad experience at the dentist when I was five years old and now I won't go to the dentist." I could not get him off his idee fixe that by noticing the belt noise I was somehow insulting or condemning him and his work. And once he mentioned his Asperger's, I went into pastoral care mode. Let's be understanding and gentle and all the rest of it.

It did no good. He kept insisting the noise had been there all along and to "prove" it, told a story of how his sister-- his own sister!-- had started hearing some noise or other right after he'd fixed her car for something, and the noise and the repair had been totally unrelated! If his own sister could do that, why then, certainly I--!

His anecdote was even less to the point than my story about my old Mazda twelve years ago in Fremont, Nebraska, but no use in mentioning that. Especially not when he was growing ever more defensively emphatic that I had deliberately insulted him by bringing the car back when he'd said it was the belt. There was nothing wrong with the belt, he said; his own car has been making noises like that for a long time, and, he was sure, so had mine!

I nearly got angry back at him as he kept on like this, imputing thoughts and motivations to me that were grossly unfair and untrue. But I remembered who I am, and I considered his Asperger's, and kept my anger down. But when he wound up by saying that he's a trained professional and he knows what he's talking about, I couldn't help it-- I said, "Well, I'm a singer, and I would notice if my car was making a high-pitched noise like that."

"You're a singer?" he said. "So am I." And he goes back into the shop and brings me a CD of country-western tunes penned and sung by his brother and himself. I haven't listened to it yet.

But back there on the street, I was so busy playing pastoral counsellor that I never got around to saying, "Never mind when the noise started, how much would it be for you to make it go away? How much just to replace the belt right now?" Maybe since he thought it was actually still good . . . He certainly never suggested that solution, he was too busy questioning my motives and assumptions.

So I took the CD in the PT and drove away. I had errands to run. The belt noise was a maddening, headache-inducing whine. At the supermarket, I decided, no, I didn't want perishables in the car until I'd dealt with this. Screw Mr. O'Brien's attitude towards customer- bought parts, I was going to the neighborhood AutoZone to do something about it.

The nice clerk there first tried to set me up with a can of belt conditioner. He even came out with me and sprayed it on.

It didn't work. The belt chirped and jingled as much as ever.

He looked more closely at it. "It could cut soon," he said. (The clerk, by his nametag and appearance, seemed Persian in origin. So it didn't surprise me that his English was a little creative.)

"You mean, break?"

"Yes. Break, cut. Especially out on the highway. It's getting worn."

Now, you could say this is just the opinion of a guy at the auto parts store. But let's say he's right. Mr. O'Brien said he didn't do anything with the belt because I hadn't mentioned it. Well, I originally booked the repair session because of the engine light only. I only mentioned the brakes because my neighbor said something to me about it later on. You mean if I hadn't said anything about the brakes, Mr. O'Brien wouldn't've fixed them, either? I'd been thinking I wouldn't go back to him because I can do without the defensiveness and the drama, but if he's going to use his Asperger's as an excuse to overlook unsafe situations, I don't want to go anywhere near his shop again.

I bought a replacement belt. The auto parts guy said it would be easy to put on, pointed out how under the hood, and even printed me out a diagram on how to do it. He said the area repair shops get their parts from them anyway, so it'd save me time if I had it already. And if the shop preferred to get it themselves, I can bring it back. Sounds fair to me.

Then I called another repair shop in town. They didn't seem to mind me bringing the belt, but they couldn't get to it till Friday. Friday! I've got places I have to get to! Maybe I know some guy that'll put it on for me?

After that, more errands (no highway driving). Noise still there, drilling into my brain. And the feeling of depression, weighing into my soul. Damn! a week later, and my car still isn't fixed, I'm having to spend more money on it, and here I can't insist on sensible treatment from the repair shop because the owner has an autism spectrum disorder? Why don't I just start whining about having cancer? (Oh, yeah. Because I don't want to go on the assumption that I still "have" cancer-- the chemo is only for "just in case"). Or maybe I can justify being a pain in the ass because I'm going in for chemo this next Monday? Does having Asperger's absolve a person from trying to see something from another's point of view, especially when the one who has it is aware of his condition? I hated being falsely accused! I hate being broke! I hate that my hair won't lie right and looks awful all the time! I got more and more depressed and had to make a special effort to smile and be kind to the people I encountered as I finished my shopping.

Getting home and making a meal of lots of fresh fruit and tons of (homegrown) lettuce elevated my mood. But now that I've had my rant, I have to remember that defensiveness is not pretty or productive, no matter what causes it. I have to buck up and remember that in the weeks to come, my feeling pleh from chemo will give me no license to inflict my discomfort on other people. It's not their fault I'm fighting cancer. May I refrain from doing drama unto others, as I would not have them do drama unto me.

Good to Go-- Mostly

Today's the six-week anniversary of my ovarian tumor and a lot of other things removal surgery. And yesterday, I had my appointment with my local gynecologist, Dr. P, to clear me for full activity.

And yes, I am cleared for whatever I want or need to take in hand. He said, "Everything inside is healed up by now." I mentioned how I had "been good" and given up on, say, opening stuck windows because I felt my abdominal muscles pull. "If you don't push past that," he said, "you'll never get any stronger." Good, that means I may and can and should go on with it. How much exertion is too much? Let's put it this way: As in ordinary exercise, I'm to ignore those who tell you to "go for the burn." Otherwise, let the garden digging begin!

And guess what? I wasn't crazy or deluded when I thought the ovary with the mass was the righthand one. Dr. P, going by the sonogram, thought so, too. Apparently, there's things you can tell from those images and things you can't.

I asked him if he was looking for some uterine problem when he clapped me in for that ultrasound. Yes, he was, and I picked up that he was more shocked than I was when the ovarian mass was revealed. I, after all, had been worrying about ovarian cancer before I even booked my examination by him in mid-February. I got my cancer anger and fear over with beforehand (thanks to the answered prayers of many). I mentioned this to Dr. P, and he said, "Yes. I see. And once you knew the mass was there, it was a matter of dealing with it."

I thanked him for his expeditious action and vigilance. As I've commented in this blog before, the symptoms that got me in to see him turned out to have nothing to do with the ovarian cancer. It would have been so easy for him to have treated them and sent me blithely on my way, with the mass silently growing in me until it was practically too late.

My friend Frieda* gave me a ride to this appointment, then had to return to work. She offered to excuse herself and come take me home, but I celebrated my liberation by walking the two miles home. It was a nice day to walk along the bluff above the Ohio River, admiring the houses and what was growing in people's front gardens.

And shortly after I arrived home, I got my car key and when out and drove it for the first time in six weeks. Only from one side of the street to the other, so I wouldn't get ticketed when the Borough swept the other side of the street last night.

But alas! not everything is good to go. The check engine light came on on the dash and wouldn't go off! This evening I asked my next door neighbor, who's been moving the PT Cruiser back and forth each week to avoid the Borough sweeper, if he'd noticed any lights that stayed on, and he said no. He thought the rotors on the front brakes were grinding, though. And when I moved the car back tonight, I noticed it, too.

I'd really hoped to go get some garden plants tomorrow. But I see online that driving with the check engine light on could prove dangerous. So I remain effectively carless until I get can get it into the shop and fixed. And that won't be till Saturday morning.

Otherwise, it's time to get back to normal and get things done.

Some Nice Straightforward Dithering

Yesterday I had my introductory appointment with my chemo doctor, Dr. L. My friend Frieda*, who'd been to the same practice when she was being treated for breast cancer, went with me and took notes.

There weren't really any major surprises about this part of the deal. I'll be getting my chemo through an IV, not through a port as I'd thought (thanks to the UPMC radio ads/public service announcements that've been running lately)-- my Stage 1 cancer doesn't warrant the big-gun doses that come with a port. Half hour of Carboplatin each time, then three hours of Taxol. I could have sworn the doctor said it was the other way around, but that's what Frieda's notes say and that's why I had her there taking them.

I'll have pills against nausea and Benadryl against some of the chemo side effects. Yep, this will all make me drowsy/spacy, and yep, not a good idea to try to drive myself home afterwards.

They'll check my blood cells and CA-125 levels each time. If the cells counts remain sufficient, the every-three-week schedule will continue; otherwise, I'll have to hold off a bit till they come back up.

I asked about supplements. A regular multi-vitamin might be okay, Dr. L said, but dosing up on one nutrient or another won't do me any good and may do actual harm. Better to do my best to maintain a healthy, balanced diet.

What about hydrocortisone creams? I'd read somewhere you can't apply steroids like that during chemo, but what am I supposed to do, mosquito season is here! No, he said, there's no problem with that, I can use them all I need to.

But speaking of skin care . . . I'd hoped my Sun Protection Factor 15 face cream would do, smeared on the top of my soon-to-be-bald (sob!) head. Nope, he said. SPF 50, at least. Wear it all the time outside, whether I have a hat on or not. "I'll get you some," said Frieda, who's recently started a job at a drugstore. "We have it on sale."

As to post-chemo-session side effects, they may not kick in till two days after. If five days afterward I'm still losing my lunch (or throwing up my immortal soul, as Mark Twain once memorably put it), that's the time to call the Cancer Center or the ER.

As I said, this was pretty much all fine-tuning and logistics. I didn't exactly thrill to the thought when Dr. L tole me what his mentor in med school, who is "an ovarian cancer guru" would have said about the fluid-filled capsule that ruptured in me. Dr. O, he said, would have classified my cancer as a Stage 2 because the sac was stuck to the abdominal lining, the peritoneum. "Hey! I don't need that!" I protested, doing the anti-vampire finger cross at him. "1C is bad enough!"

"No, I'm not saying you're Stage 2. Just emphasizing that you've absolutely made the right decision to go for chemo."

Oh, all right. Besides, no cancer was found in the solid areas of that capsule. Or in the scrapings of the peritoneum (taken from where it was stuck to, I should think???)-- they came up negative, as well. So there.

I mentioned that I'd learned online that my particular form of tumor is very rare as ovarian masses go, and that in 95% of those cases (or some number like that), it's benign. Just my luck to come out on the other side of the odds!

Yes, that's true, but at my stage and grade it will respond well to the chemo-- if there's any cells that escaped at all. Nice to hear, since I'd been on a cancer support chatroom where a couple of patients had said they'd been told that this mucinous kind is resistant to chemotherapy. Bugger that. If-- if!-- there's anything there, we gonna kill it dead.

We scheduled the first treatment for June 14th, after my birthday on the 12th and after school's out on the 9th. I'm doing mine on Mondays, so I'll (God willing!) be recovered enough to preach on any given Sunday this summer. The 7th was the date Dr. L suggested at first, but with my case, he said, another week wouldn't matter.

After I got dressed, it was off to the blood lab to give a sample so my base count could be determined (Frieda didn't have the nerve to stay in the room and watch-- shades of her own treatment), then to the scheduling desk, then to an interview with the financial aid counselor, concerning which I shall maintain a discrete silence.

Still all pretty darn straightforward. The dithering part begins with the brochures and pamphlets and certificates the scheduling nurse gave me about wigs and turbans and other headcoverings.

My hair should start falling out two to three weeks after the first treatment. I'm going to have to have some covering options, because this kid is not going "bold and bald." The world is not ready for the horror, nor am I. And laugh if you like, but I have gut-level religious objections against going around shaven and shorn, even chemically. But last night I'm looking at the wig catalog they gave me, and I'm thinking, these are inexpensive, that's good, a lot of them are cute on these young, high-cheekboned models, but I'm not madly in love with any of these styles for me, and none of the available hair colors really match mine, and do I really want to get something like this mail-order? And don't ask me why, but the fact that this company has given all their wigs girls' names really gets on my nerves. "Oh, golly, the best-looking wig is named 'Esmerelda' and a girl named Esmerelda was my worst enemy in grade school and now I gotta go round with her on the top of my head??!!!"

What I want to do is go to a local shop and have somebody advise me. Actually, the cancer center did give me a reimbursement certificate worth $200 that's good at a couple of area wigmakers. But there's still the question of real vs. synthetic and maybe real is way out of my price range and they say that it's harder to care for anyway, but what if synthetic is plastic and fake-looking and-- and-- and--!!!

OK, kid. Calme-toi, m'amie. Frieda has offered to bring me her wigs to show me what they're like, and I'll take her up on that. And I have the number of the nearest wig shop where I can redeem this certificate, and I can call tomorrow and make an appointment.

It. will. all. be. fine!

It may sound weird, but it's important for me to have this hair/head covering thing worked out before I start chemo. People are sympathetic enough already without me running around looking like "that poor cancer patient." And while I can forget and ignore the hysterectomy scar that's healing very nicely on my belly, every mirror will remind me that something in my body turned zombie traitor on me. I prefer to spend as little time as possible the next few months with my hopefully ex-cancer getting in my face.

Alarmed

Today I was looking at the copy of the pathology report I got at my surgeon's on Monday. I wanted to find out just what sort of ovarian cancer I'm dealing with so I could accurately put in the information on a cancer support website.

FINAL DIAGNOSIS

PART 1: ADNEXA, LEFT, SALPINGO-OOPHORECTOMY: MUCINOUS CYSTADENOCARCINOMA OF THE OVARY, WELL-DIFFERENTIATED . . .

Wait a minute. Left? left??

What the-- ? I could have sworn the problem was with the right ovary!

I read the report on the right one, and it said, "ADNEXA, RIGHT . . . ENDOMETRIOTIC CYST WITH CALCIFICATION IN THE OVARY." But that wasn't the 6 cm ovary with the Stage 1A tumor.

This shook me up! Ever since February 19th I was sure everyone had said the tumor was on the right!

I called my surgeon's office and talked to the nurse. "Yes," she reported, "the mass was always on the left. It's out now. Does it matter?"

Yeah, it matters. If I heard that wrong, what else have I missed?

It may be my intellectual pride talking, but this error of mine bugs me more than anything.

Do You Want to Go for a Ride?

I am two years and six weeks old. I am lying on a strange, high bed set outside a door in a long, gray corridor full of doors. Suddenly, a dark-haired young man in a white coat looms over me. His face is marked by disapproval, and a little alarm. His expression voicelessly rebukes me: "Why aren't you asleep?" (I know this grownup look.) He recovers himself, applies a smirk, and says to me, "Little girl, do you want to go for a ride?"

"Do I have any choice?" I think to myself.

I don't. I'm about to be taken to surgery to remove a benign cyst that has closed my left eye. I am not aware of this, or I had forgotten it, but I yield where I cannot rebel. More young men in white coats come, the high bed turns out to have wheels, and off I go.


Yesterday afternoon I had my first follow-up appointment with Dr. C, my gynecologic oncologist. Though nobody told me this ahead of time, I figured the agenda would cover checking up on how I'm doing post-op and discussing my further treatment.

I've been remarkably free of what is called "cancerhead"-- uncontrolled and fearful obsessing over one's cancer and its implications. But going into this appointment, I had three things I hoped would happen or that I would not have to face.

First, that I could ask my surgeon how my ovarian tumor came to rupture without coming across as judgemental or as casting aspersions on his competence.

Second, that he would not, in anywise, suggest or recommend radiation therapy. It's one thing if you're fighting breast cancer, but there's too much essential equipment in the abdomen that can get permanently fried. And according to accounts I've read online written by women who have gotten radiation for ovarian cancer, at some point in the process they administer the treatment by way of rods put up your . . . well, you know. O noes!! Du nawt want!!!

And third, that it would all be straightforward and conventional and I wouldn't have to make any hard choices. Did I want to go for a ride? I don't know, you're the prominent gynecologic oncologist, you tell me!


It worked out well that Ellen*, the friend who drove me to the doctor's office, is a Registered Nurse-- not in oncology, true, but knowledgeable and able to take notes while I asked questions. Did I want her in the exam room with me? You better believe I did.

So there we are, waiting, and in comes Dr. C wearing a bolo tie. Don't mess with Texas? He grins and says, "Boy, you just have to cause trouble!"

"Yeah, gotta be original!" I quipped back.

How original I am, he was about to tell me, right after my exam. Seems that when they got me open, they found that the tumorous ovary was lying on top of a sac of clear yellow serous fluid-- "It looked like pee, if you want to know." The ovary was adhered to it and it was adhered to the tissue below/anterior to it-- "Like endometriosis-- I had a terrible time getting it all off." It was this sac of liquid that ruptured; the problem ovary itself came away whole. And the quandary is, was that sac part of the tumor or something entirely separate stuck to it? The serum in it looked nothing like what was in the ovary (which Dr. C said "Was full of brown sludge.") And when the lab tested some of the serous fluid, it came up clear of cancer cells.

So that took care of concern No. 1. I'd figured adhesions came into it . . . Could that have been the septation Dr. P my gynecologist had shown me on the sonogram in February? "Oh, that ovary was full of septations. Like a bunch of grapes inside." But attached like a bubble head out the end of it? No, Dr. C didn't see anything like that. "Could what we saw have been this sac behind the ovary and on the sonogram it looked like it was in the same plane?" "Very possibly."

Which led us to the question of what to do about it all. "You've got a choice," my surgeon said, "And there's no right answer." **

Oh, no!!! You're just supposed to tell me what to dooooo!!!!! . . . Take me and my gurney and just wheel me down the hall!!

"Here's your choices. We can assume that the fluid under the ovary had nothing to do with it and the cancer was restricted to the ovary. The lab had to take several sections before they found the cancer in it. That would put you at Stage 1A. The tumor was Grade 1, very well differentiated, and that's the least aggressive kind. Chemotherapy would make no difference in your prognosis, the surgery took care of it all. We'd just monitor you every three months with a CT scan, an office exam, and a CA-125 test. And you'd watch to see how you felt and if you had any symptoms. Then we'd go to six months if there was no sign of recurrence, until you were five years out.

"Or . . . we can assume that the sac we found was part of the tumor, and since it ruptured, that puts you at 1C. A third of the time a test of fluids can come up showing no cancer cells but cancer is present. You can do chemotherapy to make sure there's no cancer in you, and again, we'd do the tests and watch and see."

He paused. "So what do you want to do?"

Oh, phooey. So this time I have a choice whether I want it or not.

Dr. C said that even at Stage 1C, the recurrence rate is really low, only 10% - 15%. "The probability is that you are cured."

He went on to say, "Now, chemo is poison. It's there to kill the cancer cells. It will kill healthy cells as well. But if you do chemo, things go back to normal. But with radiation, the damage is done and can't be undone. And there's a lot in your abdomen that can be damaged." In other words, radiation is not indicated for me-- yay!!!!

"It's up to you whether you want to do chemo or just watch and see."

I felt myself poised at the brink. I flirted with the idea that I could take my chances and not have to undergo the expense and rigors of chemotherapy after all. A reprieve?

But what if I was wrong?

I asked more questions and Ellen did, too. Dr. C said, "Have you ever heard of the term 'analysis of errors'?"

Ellen had; I had not. "No . . . is that like Worst-Case Scenario?"

"Not exactly. It's considering what could happen if you make the wrong decision. If you do chemo and there was no cancer there anyway, you've gone through all the stress of chemo for nothing. But you'll never know that."

"Like, 'See how great my elephant repellant works-- we never have elephants around here at all!'"

"Exactly. And if you don't do chemo and the cancer does come back . . . We couldn't talk about a cure anymore. The cure rate for recurrance is only 3 to 5%. "

Oh! I'd say that was a piece of information I needed . . .

"I'd be in remission only?"

"Yes, and remission for ovarian cancer would probably get you only two and a half more years. We can't just go in and take a tumor out. When ovarian cancer remanifests itself, it's all over the abdomen. Have you ever seen algae on a pond?"

"Yes."

"It looks like pond scum. It covers everything. We can do our best, but we can't get it all." And if I understood him right, at that stage you can't use the first line platinum-based chemo drugs, because the cancer will have developed a resistance. Or was he conflating this with what happens if one does chemo and it comes back anyway?

He explained that the metastasized cancer covers the organs and keeps them from reasbsorbing the four to five liters of fluid that wash through everyone's bellies every day. Which is why women with advanced ovarian cancer bloat up. "It's called ascites."

"Was that sac of fluid you found in me ascites?"

"No, no sign of ascites in you."

We asked more questions. He said they've developed good anti-nausea drugs that you get before chemo. "They make you drowsy, so most women just sleep through the therapy. Afterwards-- it depends on each person, you'll probably feel like you're getting over the flu for the next couple of days."

Ellen said, "I've had patients who've asked me, 'Is there alternative medicine for this?'"

"If there was, we'd give it," Dr. C answered her. "The alternative is, you can die."

More questions, more answers, more going over and clarifying what had been said before. Talked about statistics: Every year (in America?), about 20,000 women get ovarian cancer and in the same year 16,000 or so will succumb to it. And about odds and percentages. One can play them when dealing with large groups, but when it comes down to oneself, the odds are either 0 or 100%.

If it were to come back, my kind of ovarian cancer would recur somewhere in the abdomen. It isn't metastasized through the bloodstream, so it wouldn't go to the brain or bones or wherever.

Some comfort, when you consider all the damage it would do in one's midsection! Though maybe it's good to limit the twinges one could get cancerhead about.

For me, though, the fact that my cancer was caught at Stage 1 weighs heavily towards total cure, whichever way I would decide. Unlike for 80% of ovarian cancer patients, who aren't detected until they're Stage 3 or 4.

Finally, Dr. C looked me in the eye and said, "All right, do you want to do chemotherapy?"

I looked back at him and said slowly (and I thought, meaningfully), "I don't want to do chemo . . . "

"All right," he said briskly. "That's your decision."

"No, listen--"

"No 'buts'!"

"No, listen! Do I want to do chemotherapy? No, I do not. Do I think it might be wise to do chemo? Yes. Do I think the consequences of not doing it now and wishing later I had are too great? Yes, I do. So yeah, even though I don't want to, yeah, I'm going to do it."

Sheesh! Enough with the drama already! I didn't want to get ovarian cancer, either, but I've got it-- or at least, I need to make damn sure I've no longer got it-- so I have to deal with it, whether I want to or not.

Dr. C told me what it would be, and it was very familiar from my on-line reading. Six courses of Carboplatin/Taxol, one every three weeks. Happily, there's a UPMC chemo center a mile and a half from me, so I won't have to get a ride downtown. "The chemo's the same everywhere in the hospital system, no matter where you get it." He'd have his nurse look up the number and get in touch with the chemo doctors to set up an initial appointment.

I asked, oh yes, what about leukemia as a side effect? Ah. That's a danger for very young women, in their teens and early twenties, whose blood cells are still developing. (Or something of the sort.) "You're still young," he allowed, "but I think you're a little past that!"

Yeah, I'm not a little girl anymore. And this time, when the medical guy asked did I want to go for a ride, I did have a choice in the matter. Later this summer when my hair has fallen out and I'm feeling groggy and grotty and my mouth tastes like old aluminum, I may temporarily regret my decision. But given the fact that I've got my support system and my financial aid in place and my momentum's going, and given the consequences of being wrong, I think I've made the right one.

___________________________________
**Some dialogue word-for-word; other parts reconstructed or conflated.

For What It's Worth

I'm starting to question the value of spending too much time reading websites and watching YouTube vids on ovarian cancer and ovarian cancer survivors/fighters.

Maybe later-- assuming I have to do chemo-- they'll be a comfort and a support to me. But right now, ya know, it really isn't useful for me to be glued, say, to the video made by one woman with Stage 1C who celebrated her five-year "cancer-free" anniversary and two weeks later found out her belly was riddled with tumors (how the hell did they miss that, I wonder?). Or to be reflecting on the implications of how "They're not talking about a cure any more; I'm now just 'in remission.'" Or gawking at another vid a 3C sufferer posted last summer noting that she's now been through six, count 'em, six major surgeries, and consequently wondering what it Means that she hasn't responded to any comments since then . . .

It's not that I'm unwilling to face potential reality. It's more that I'm taking to heart what my Lord Christ meant when He said, "Who by worrying can add a single hour to his life? . . . Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

So right now, my job is to recover fully from last week's surgery. So far, so good, and I've really glad I asked my surgeon about the self-absorbing sutures before I went into the OR. My incision is healing into something I can be going on with for a lot of years to come. I'm not saying I would have been depressed by the sight of staples; I'm pretty good at detaching about these things. But from the pictures they just look more . . . makeshift, somehow.

Then as I recover, in a little over a week, on the 10th, I have my strategy appointment with my surgeon. Yeah, I hope I find out how on earth the stupid tumor came to rupture. But beyond that, I hope to be finding out what my treatment options and strategies might be.

After that, we'll see when the time comes. There is absolutely no point in my getting bent out of shape stressing over things before I truly have to take them on.

Besides, what's the worst thing about losing time to suffering and to undergoing an early death? Besides the suffering itself-- Lord forbid I should minimize that! -- I mean. Is it not the diminished chance to experience and enjoy life? So why and how should I fail to experience and enjoy life while I've got it, especially now when I'm actually feeling rather well (all hail, Vicodin!)?

The other thing is, why should I waste my time fretting over possible death from cancer, when I will have to die of something or other eventually anyway? Why should I let Death petrify me if it should approach wearing that particular mask, as opposed to any other? Is Jesus Christ not my Savior? Has He not borne my sins and my death in His body on the cross? Did He not rise again to give me life eternal? For me, to live is Christ and to die is gain!

But I am convinced that I shall remain in this land of the living for quite awhile longer. There may come a time when reading about survival rates and possible complications and recurrances and so forth will be edifying. But right now, I intend to enjoy the life I have. And if that means watching episodes of Gordon Ramsey's Kitchen Nightmares on Hulu.com, so be it.

In Today's Breaking News . . .

Got a call early this afternoon from the physician's assistant at my gynecological-oncologist's office. The lab results from my surgery were in. And guess what? My surgeon is not God. Turns out the mass he removed from me last Thursday was not, after all, a low malignant-potential tumor. It was bog-standard ovarian cancer. Stage 1A, Grade 1.

Which if you're going to get ovarian cancer is the stage and grade you want it to be. The PA said they took and analyzed "a gazillion" specimens and everything except the right ovary was negative.

So that means they got it, right?

Not so fast. Turns out the mass ruptured during surgery, so Dr. C himself puts it at Stage 1C instead.

Now I thinks to meself, I thinks, How on earth could that have happened . . . ? Did somebody poke a finger in the wrong place and Pop Goes the Weasel?

Yeah, right. That naive bit of dubiety rises from my imagining that my ovaries and other bits were just floating around loose in my abdomen and the tumorous one simply had to be picked up and cut off. No. Things in the body are adhered and attached to other things so they won't rattle around in your insides and get all tangled up. And considering that my right ovary/tumor had a very delicate-looking septation off one end of it (I know-- I saw the picture at my gynecologist's office in February), it's not surprising it should have torn a bit in the removal process.

In a couple of weeks I may well find out if my angle on this is correct, because I'm to come in for a follow-up visit with Dr. C and the PA. Still working out the logistics on getting a ride into town, but it'll be either on the 10th or the 17th.

The way I'm thinking about it is, the mass was a Stage 1C ovarian cancer, and we'll be discussing how to keep it in the past tense.

. . . Yeah, that very well could mean chemo.

Idoanwannadochemoidoanwannadochemoidoanwannadochemo!!!

Yeah, nobody does. But people take it and they get through it and come out fine the other end. And if they have to fumigate my belly, so to speak, to make sure all the cancer bugs are gone, that's what we have to do.

The Lord is good; His Spirit is with us, and I am reminded that the reason ovarian cancer is so scary is that most of the time it's not discovered until it's in a later and much less treatable stage. It's not that ovarian cancer cells are more virulent or potent than the kind that settle in elsewhere.

And even though this has turned out to be what I feared back in early February, it's not the same. Thanks to the providence of God working through my gynecologist, this mass was discovered early. And if the fight needs to continue a bit before total victory is won, so be it.

+++++++++++++++

Otherwise, I'm doing pretty well this first full day home. Swelling and bruising going down, pain well under control even without constant Vicodin. Enough energy that I have to remind myself not to do Forbidden Things. Got up mid-afternoon and came down for some lunch; then early in the evening I got dressed (yay! I can get into my corduroy jeans!) and my friend Frieda* and I went out for a stroll around my garden to see what's in bloom.

After supper she sat down at the piano and played some music she'd brought, then started in on hymns. Unfortunately, the hymnals I had on the piano ledge didn't have some of the hymn/tune combinations we wanted, and I knew better than to run (!) up to the third floor to get the hymnbooks that do. So I set my Welsh hymnal before her and she played "Sanctus" and "Aberystwyth" for me while I stood there and sang them yn Cymraeg.

Oooh, danger! danger! Don't get someone who's even part-Welsh started singing Welsh hymns at 10:30 at night! Especially one who's only five days post-op! I wanted to sing more, more-- and knew I needed to stop before I messed myself up. Not from pain-- I'm trained to do intercostal breathing, so it didn't affect the surgery site. But from pure exhaustion, that I would have ignored from the hwyl of the words and the music.

No. There are times to sing till you drop. Tonight was not one of them.

Adventures in Medicine

Well, I've been in the hospital since Thursday morning and coherent enough to get online since Thursday night, but only this morning did I find a person here at UPMC Mercy who could show me how to get connected on their wireless network.

And that was by coincidence, since I'd intended to read the newspaper my friend Frieda* bought me yesterday this morning over breakfast, but I guess it fell on the floor over night and the cleaning lady cleared it away. I lamented the loss of my paper to the nurse (a guy) and he said, "I see you have your laptop with you. Why don't you go on one of the newspaper websites and read it there?" And he showed me how.

Believe it or not, breakfast this morning is a medical adventure in itself. I still haven't passed gas (a very important indicator!) so far, so technically I shouldn't have anything by mouth. And I'd been feeling queasy. Etc. But my surgeon's fellow in their practice, Dr. K, who was in early this morning, said they could try me on some liquids this morning, regardless. 4 ounces of apple juice down the hatch so far, and working on the grape. So far, so good.

But people (all two of you!) will want to know about the surgery on Thursday.

Here's the good news: My surgeon, Dr. C, says everything looks good; the mass they took out wasn't cancer and there was no sign of cancer anywhere in the abdominal cavity.

Here's the routine news: They've taken all my ladybits and scrapings of everything else in there (from the lower lungs on down) to the lab to make absolutely-certain-sure there's no cancer anywhere.

And now, the ambiguous news: The ovarian mass, while not cancerous, is nevertheless not a "normal" cyst. If I understand correctly, it's not even precancerous. What they're calling it is a "low malignant potential tumor," and I have no idea where the hyphens should go on that. Dr. K says they'll go over all that when I'm discharged.

The mass is not invasive and therefore not a cancer, but wasn't a benign thing to be having in me, even so. There's a 15% chance it could recur, and there's nothing that can be done to make that risk nil. There's no role for chemotherapy or radiation to obviate that 15%, because, well, it's not a cancer! But if I understand the doctor's message right, it's the short of thing that can pave the way for a cancer in the future.

I think. The inconvenience in all this is that Dr. C had leisure to talk to my friend on Thursday, but not to me-- I was in the Recovery Room. So I couldn't ask any questions!

She said Dr. C told her "Nobody wants to hear this sort of news. Everybody wants things black and white."

Well, maybe, but my first reaction was, "There I go again, being original! I never can seem to do things the ordinary way!"

And if I want things to be black and white, it's not just for my health's sake, but so I can explain it simply and easily to people and not bore them going off on tangents.

Oh, well. It is what it is. And if my breakfast of juice and jello will stay down nicely, that will be one less adventure to confront!

Ominous

Today I got called in to teach at an elementary school I'd never been to before. Despite what I'd heard about the difficulties of its open plan design and about the recalcitrance of some of the students, the day went rather well.

It wasn't until I was well on my way home that I thought at all about perhaps getting the results of Monday's CAT scan today. And I don't know why, but as I was putting my key in the door and wondering if there'd be a message on the answering machine, I thought to myself, "I don't have a good feeling about this."

And immediately reflected, "Yes, but my pessimism won't make things bad if they really are good, and I would like very much to be proven wrong."

Yes, the machine was flashing and beeping. It was the nurse at the surgeon's office, who had called this morning. The CT scan results were in, and I could/should call her to discuss them.

And, she said, there were a couple of things they needed me to do before the 25th.

One was to go to the local hospital where I had the scan and pick up the films. I'm to bring them with me when I come for my surgery. So (unless the envelope is sealed) I guess I could take a look at them myself after all.

As for the second thing, she said, "We also need you to get an ultrasound done, of your liver, prior to the surgery."

I sat there, still in my coat, on the arm of the sofa next to the phone table. My liver. Liver cancer. She's telling me the tumor on my ovary actually is malignant and it's already spread to my liver. Stage IV.

And again I have to face my own mortality. I've relaxed a bit from a month ago when my gynecologist gave me the word about the ovarian mass. I wasn't prepared for this, at this point. Maybe later, later, later, when I'd fought the good fight for awhile and was getting tired of it all. But now? Frankly, I was and am rather scared.

Feeling that way, I know it's time to rally the prayer troops. That's what kept me out of anger and despondency a month ago; that's what's going to do it now.

So although I'd planned to spend the evening patching my upstairs hall floor and working on my sermon for Sunday (I'm subbing for a very ill pastor over in Ohio), I used most of it letting people know my latest need. Facebook, email, phone (that call was to my mother), and yes, don't laugh! the community blog frequented by regular commenters on i can haz cheezburger.

And looking at online information about liver cancer. Oh, joy. Another of the types with only subtle symptoms, most of which I don't have. But now I'm wondering if the feeling of pressure I've had on the right side of my abdomen and just under my ribs is my liver being enlarged, and not referred pain from the ovarian tumor at all. Absurd, how I didn't feel it at all lately until after I got that phone message, and now I do with a vengeance.

I'd still like to write a page or two of sermon before I turn in. But I can't stay up too late-- they've scheduled that ultrasound for me at 8:45 tomorrow morning, at a hospital a few miles down the road towards Pittsburgh. Nothing by mouth after midnight. Right. I'm getting good at this.

I'll try to put in a call to my surgeon's office and talk to the nurse about the CT scan results before I leave for the ultrasound. Better I should know going in what it is they want from this new test and face it squarely, in the power of the Lord.

(Heaven knows I have none of my own.)

Mild Hysteria

My surgery is two weeks from tomorrow. Today my MD cleared me as healthy enough to tolerate it. Too bad I'm not healthy enough to not need it!

And today I got the pathology report from what they sampled last Friday. No uterine cancer, thank you very much. And CA-125 levels in the normal range.

Which is good. But not always good for my attitude. Because it makes me wonder, do I really gotta go through this?

I mean, there's the "discomfort" of the post-op itself. Pain! Swelling! Mindless-making drugs!

Then there's the six weeks of enforced inactivity. Right when my house needs so much renovation! Right at the start of gardening season! Right when I should be taking advantage of the last weeks of the school year and getting in a lot of substitute teaching!

And what am I to make of what I read about hysterectomies online?

There's one site (which shall remain unlinked and unnamed) that seems dedicated to the proposition that 99.9% of all hysterectomies are needless and avoidable and only perpetrated by devious, greedy doctors out to make a quick buck at the expense of downtrodden women. What it tells you about the aftereffects will curl your hair. Nerve damage! GI tract disablement! Your ribcage falling down to your hipbones! Not to mention lifelong depression, loss of maternal feelings, and perpetual heartbreak, regret, and distress.

Then there's another site (which shall also remain linkless and nameless) where women who have had hysterectomies compare notes, and on it we have women complaining that their gynecologists wouldn't take their pain seriously and refused to take their bothersome female plumbing out.

Of course, this site makes its own contribution of stress, such as the contributors who say it was over six months to a year before they "got back to normal."

So with all this rattling around my brainpan, again, I can't help wondering, Do I really have to have this surgery? I mean, the gynecological oncologist is of the opinion that the ovarian tumor isn't even cancer! Can't we just ignore it and wait for it to go away?

. . . Oh yeah. Right. At my age, these things don't just go away. At my age, I really shouldn't have a goose egg in my abdomen like this. And malignant or "benign," the thing is growing. It's bad enough that it's already given me a pot belly I can't get rid of by any exercise of dietary discipline. But now it's interfering with my digestion. Benign or not, it can cause mechanical trouble. And they won't really know what sort of thing it is until it's removed.

So it's time to accept the PITA, and keep doing what I need to do to be as ready as possible when the time comes.